SHARING THE MISSION TO CONQUER RARE DISEASES

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At an ever-quickening pace, biopharmaceutical companies and patient advocacy groups are banding together to hasten development of new drugs for rare diseases. Advocacy groups rely on their partners for financial and scientific support while providing access to repositories of patient data–the key to understanding rare diseases–as well as assistance with clinical trial enrollment. These relationships bring tremendous value to both sides but also present challenges. Increasingly, patient groups expect to be treated as equal partners. They want companies to consult with them earlier in the design of clinical trials, give them greater access to data generated in the studies and make longer-term commitments to assist their patient communities. In this report, Syneos Health looks at the dynamics reshaping collaboration in the rare disease space.

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